Inside Health

'91 Law Says Failing Patients Must Be Told of Their Options

By LEONARD SLOANE

Published: December 8, 1990

Federal legislation that takes effect late next year will require hospitals and nursing homes to tell patients if their states will let them refuse treatment that would prolong their lives if they become incapacitated. Under the measure, the patients must receive written information regarding their rights at the time of admission.

Many health-care institutions say they will include information to conform with state laws in their admissions literature. States control the options available to patients, through laws approved by their Legislatures or rulings by their courts. But the patient must be told what those options are.

"People will be given information about their state's laws and their rights under those laws to refuse treatment," Fenella Rouse, executive director of the Society for the Right to Die, said in an interview. "It will be a continuing part of medical treatment."

"Let's let people have the dignity of deciding what they want and what they don't want," said Senator John C. Danforth, Republican of Missouri, a sponsor of the measure. "Providing people with information so that they can decide their own fate is something that is very desirable."

Experts say there is some doubt that the measure, which takes effect next November, will live up to its expectations. "It depends on how the new legislation is implemented through regulations and what happens at the service-delivery level," said Rose Dobrof, director of the Brooklyn Center on Aging.

Some opponents of the proposed legislation still oppose it. "We feel that these laws promote the death of patients in circumstances that are not appropriate and not justified," said James Bopp Jr., general counsel of the National Right to Life Committee. "The patient isn't really deciding; he is allowing someone else to."

Yesterday the National Health Lawyers Association sponsored a colloquium on autonomous health-care decision-making under the new Federal measure. Representatives of many medical and consumer groups met in Washington to discuss enhancing public awareness of provisions in the budget law relating to advance medical directives.

The measure, the Patient Self-Determination Act, is often described as a medical "Miranda warning," like the requirement that police officers advise arrested suspects of their rights. Specifically, it calls for hospitals, nursing homes, health maintenance organizations, hospices and home health-care companies that participate in Medicare or Medicaid -- all such medical centers that rely on or seek Government support -- not only to inform patients of their rights, but also to note in a patient's medical record whether the patient has, in writing, rejected life support.

Patients can do so in a signed "advance directive" that takes effect if they become incapacitated. These written instructions are either a living will, which permits a person to express a choice on life-sustaining treatments, or the designation of someone to make health-care decisions when the patient cannot, a health-care power of attorney, or health-care proxy.

Only about 10 percent of mentally competent adults have signed a living will. A far smaller number have designated someone else to make the decision.

As the ability to sustain the lives of the seriously ill or seriously injured is being increased by advances in medical technology, so, too, is recognition of the rights of patients to direct the withholding or terminating of treatment.

"There is an outmoded concept that you park your ability to make decisions when you register at a nursing home or hospital," said Paul Willging, executive vice president of the American Health Care Association, a nursing home group. "This law is really trying to get away from that."

Edward S. Schlesinger, a New York lawyer, said the Federal measure "is leveling out the playing field from the patient's point of view." He added, "It will have a salutory effect because it stands to reduce the pressures on patients and the family."

Forty-one states have living-will laws. The nine others are New York, New Jersey, Massachusetts, Michigan, Nebraska, Ohio, Pennsylvania, Rhode Island and South Dakota. In New York and New Jersey, the highest courts have issued decisions recognizing living wills.

But New York is among 18 states that allow health-care proxies. The New York law, which takes effect Jan. 18, allows individuals to appoint someone to make decisions, including decisions about life support.

The Federal Patient Self-Determination Act, as well as most state laws and court decisions on the subject, allows hospitals and nursing homes to express their beliefs to the patient before admission. Some centers will, under state law, perform medical procedures on incapacitated persons who don't want them.

"The classic example is tube feeding," said Sheldon L. Goldberg, president of the American Association of Homes for the Aging; some nursing homes insist on providing nutrition. "If a facility expresses its conscience that way, a person can decide not to go there."

Of course, hospitals and nursing homes will have to ask if an adult patient has made out an advance directive and note the answer in the patient's files. And hospitals and nursing homes must educate their staffs and the communities that they serve about the advance directives and the applicable state law.

"There has been a growing trend of hospitals recognizing their obligations," said Barbara Berger Opotowsky, president of the Better Business Bureau of Metropolitan New York. "Now people will be much more aware of what they're getting involved in."

Map: "Decisions on Tube Feeding, State by State" showing in which states it is permissible to withhold or withdraw tube feeding, where it is permissible to withdraw or withhold under certain circumstances, where there are statues that authorize withholding or withdrawing, where tube feeding is required in certain circumstances, where there are natural death or living will statutes that authorize the removal of life support in general, where legislative or judicial interpretation in necessary for withholding or withdrawing tube feeding. (Source: Society for the Right to Die)